Stamping Out Stigma

What are the types of stigma facing people living with headache diseases?

CHAMP (Coalition For Headache And Migraine Patients) is dedicated to working with the migraine and headache community in a multifaceted approach to reduce the stigma of our diseases.

Stigma is “a degrading attitude of a society” that discredits a person or group because of an attribute; in this case, headache diseases. Being exposed to stigma can result in biases that fuel personal, interpersonal, cultural, and structural challenges. Sadly no one is immune to this form of judgment.

The effects of stigma can take away one’s dignity, leave them feeling marginalized, and keep a person from achieving their full potential. Stigma can prevent individuals from seeking professional evaluation and treatment, disclosing their diagnosis, and accessing medicines.

There are many unfair experiences that people with headache, migraine, and cluster diseases have lived through because of stigma. CHAMP has identified four categories to serve as a framework for understanding stigma.

Self Stigma

Interpersonal Stigma

Cultural Stigma

Structural Stigma

The internalized beliefs of powerlessness and that headache diseases are not worthy of effective medical treatment or accommodations by society.

Negative comments and actions from people who are within the direct social sphere of people with headache diseases.

Laws, policies and systems that are biased against treating headache diseases with the resources and respect afforded to other similarly disabling diseases.

Self Stigma

Self stigma is the feeling of unworthiness by people with headache diseases that prevent them from seeking better care and reasonable accommodations. It would be impossible to count how many of the tens of millions of Americans with headache diseases have turned inward because of this self stigma. But there is help. Attending in-person events, participating in support groups, seeking out educational materials, and engaging in online communities are ways to connect and overcome self stigma.

Interpersonal Stigma

Tackling interpersonal stigma can be difficult because negative comments and actions come from people who are within the direct social sphere of people with headache diseases. This includes the insensitive and hurtful words or behaviors from friends, family, colleagues, insurers, and even doctors. Empowering people to speak up in the face of direct stigma and giving them the tools to have effective conversations are vital elements in combating interpersonal stigma.

Cultural StigmaCultural stigma is the pervasive and widespread societal belief that migraine and other headache diseases aren’t worthy of respect, accommodations, and effective treatments. Cultural stigma is what leads to insensitive trends like #MigrainePose, jokes in media about people faking migraines as an excuse to get out of work, and a general sense that migraine is just a headache. CHAMP released a Language and Image Guide to move the needle on public perception (available for download at HeadacheMigraine.org). The guide challenges cultural norms and outlines best practices for anyone writing, speaking, or using visuals to communicate about headache diseases.

Structural Stigma

Structural stigma is the laws, policies, and systems that are biased against fairly treating migraine, cluster, and headache diseases. By coming together and asking for more research funding and equality in federal policies, the headache disease community is making its voice heard. We are also organizing to fight insurance policies that discriminately restrict our access to FDA-approved treatments.

Ways to Combat Stigma

The following programs highlight how the headache disease patient advocacy community is working to fight all four types of stigma. Check out the Resource page for links to these programs.

Self Stigma

Interpersonal Stigma

Cultural Stigma

Structural Stigma

Miles for Migraine community events, education days & youth camps

Runnin’ for Research events

Migraine World Summit educational series

U.S. Pain Foundation’s INvisible Project

American Migraine Foundation’s Move Against Migraine Facebook support group

CHAMP is committed to fighting stigma through the CHAMPion Action Center (HeadacheMigraine.org/get-involved). This one-stop shop helps patients and allies learn about important issues and take action. To learn more about each anti-stigma initiative listed above and how to get involved, visit the CHAMPion Action Center.

The scope of challenges the headache, migraine, and cluster disease communities face is extensive, destructive, and daunting. Stigma, while disparaging, is giving us a unique opportunity to inform the public about the challenges we face. The intelligence, passion, and dedication of those living with headache diseases are the keys to fighting stigma. The strength our community shows each day battling our challenging diseases is the same power that will enable us to overcome stigma. It is up to each of us to become advocates for change. We hope you’ll join us!

Lindsay Kryzak is the Communications Director for the Coalition For Headache And Migraine Patients (CHAMP). As a caregiver to a long-term roommate who suffers from chronic migraine, Lindsay saw firsthand how the disease and its stigma can alter the lives of those you love.

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